Hi everyone, it's been a while - Update on Camryn

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Camryn'sMommy
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Hi everyone, it's been a while - Update on Camryn

Post by Camryn'sMommy »

Hi everyone - Camryn continues to do very well. She is 4 1/2 now and has just started preschool - she loves it! Her teacher is great about the gluten and they have gluten-free play dough for all the kids (there is another child in the class who has a gluten "allergy" among other allergies). I thought it would be harder during snack time, but she just brings her own snack and fits right in. We have the occasional bouts of D, but for the most part she is fine. If she gets a miniscule amount of gluten she'll be in the bathroom within 30 minutes (it used to take 3 hours, so we've noticed the time has greatly reduced). She handles it well though.

Her Dr. wants to do a gluten exposure test, but I don't want to un-do all the positive strides we have made with her condition. Everyone keeps saying "maybe she will grow out of it"....I honestly don't think she will.

I hope everyone else is doing well!! Here is a picture of Camryn on her first day of school.

~Laura

P.S. - Camryn is getting a little sister - baby #3 is due in April. Cross your fingers for no gluten sensitive genes!


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Mommy to Camryn - 8 years old - dx'd with LC 8/08
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tex
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Post by tex »

Hi Laura,

Wow! It's hard to believe that she's starting school already, and it's impressive that's she's not intimidated by this big change in her life. It's great to see that she continues to do so well in managing her MC, too. That's interesting that her reaction time has shortened so significantly. I wonder if that might suggest a mast cell reaction to gluten.

Regarding the comments about kids outgrowing gluten-sensitivity: While kids sometimes outgrow other food issues, such as lactose intolerance, and/or gastroesophageal reflux, and even a wheat allergy, they never outgrow gluten-sensitivity in the form of a food intolerance, (which results in an autoimmune reaction). If you want a reference:
# Children don't outgrow celiac disease and so must continue the gluten-free diet their whole life.
http://pediatrics.about.com/od/diseases ... ac_dis.htm

Here's another:
Even though some people are able to resume eating gluten, without immediate symptoms, they do not “outgrow” celiac disease, and it is not “cured”. The gluten free diet treatment should be continued for life.
http://www.cdhnf.org/user-assets/docume ... eliac2.pdf

While Camryn doesn't have celiac disease, per se, the mechanism of the reaction in the gut is very similar, except that much of it is centered in the colon, rather than in the small intestine, (as with celiac disease). Please don't let anyone pull the wool over your eyes, with their quasi-scientific sounding mumbo-jumbo. Here's why so many people are confused about this issue. According to some allergy specialists, about 80% of children outgrow allergies to milk, eggs, wheat, and soy, by 5 yr of age, while the Asthma and Allergy Foundation of America is a bit more conservative, and claims that 50% of children with allergies to milk, eggs, wheat, and soy will outgrow their allergy by the age of 6. With such a difference in statistics, it sort of appears that there may be a lot of guesswork involved, with these numbers. At any rate, this is all in reference to a classic allergic reaction, involving anaphylaxis, (an IgE reaction), and it has nothing to do with autoimmune reactions to proteins in the gut, (which is an IgA reaction), nor do classic allergies, in fact, have anything to do with the digestive system. Allergies are a totally different breed of cat, than the food intolerances that we have to deal with, with MC. The type of gluten-sensitivity that Camryn has, is non-IgE mediated, and it's not an allergy, at least not by the classic definition. The reason why children outgrow egg allergies, for example, is because typically, they are allergic to the yolk, (which causes an IgE reaction). With MC, those of us who are sensitive to eggs, react to the albumen, (the white of the egg, not the yolk). We can usually safely eat the yolk, (provided that we can completely separate it from the albumen. For us, the albumen causes an IgA reaction.

The bottom line is, you are quite correct - Camryn will not outgrow her gluten-sensitivity.

Congratulations on the up-coming addition to the family.

Thanks for the update, I always look forward to them,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by JLH »

It's just great to hear from you and see the photo of Camryn. She's adorable. So happy that things are going well.

The son of a woman I used to work with outgrew Celiac Disease!

How is your son doing? No sensitivities, I hope.

Congrats on the new baby. Let us know when she arrives.


Joan
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LDN July 18, 2014

Joan
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Post by tex »

Joan wrote:The son of a woman I used to work with outgrew Celiac Disease!


That's more than a little difficult to believe. I would bet that he is simply asymptomatic. I would have to see evidence of negative antibody test results, and normal histology of biopsy samples of the small intestine, to be convinced that he no longer has celic disease. There is no cure for celiac disease, but like an IBD, it can certainly remain latent for long periods of time, before clinical symptoms reappear.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by JLH »

That's probably it. I hope I hear from Jimi.

I don't know how old Jeff is but he has young kids of his own.
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LDN July 18, 2014

Joan
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Post by starfire »

So glad for the update and Camryn looks wonderful. What a georgeous little girl. So glad she is handling the diet OK.

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
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Post by MaggieRedwings »

So happy to hear Camryn is doing well in preschool and they recognize and address the issue with the children. She is absolutely gorgeous and boy does time fly. Seems like yesterday we first hear of Camryn.

Love, Maggie
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Post by Polly »

Hi Laura!

Great news - thanks for the update!

I think a gluten challenge is a complete waste of time. You already have the proof, IMHO - she is on the toilet within 30 min. of ingesting a miniscule amout of gluten.

You will appreciate this story: I was at a party last weekend and began talking to a 9 year old youngster, who told me that her 12 year old sister was planning to be a gluten-free chef when she grew up. Of course, I immediately looked for the sister and struck up a conservation. She was amazingly informed about all aspects of her celiac disease and quite proactive. Told me she often takes her own food to parties or restaurants and does not mind at all. Like Camryn, she was diagnosed as a toddler; she gained 6 inches in the first year after diagnosis! She already has wonderful ideas for gluten-free cooking! I told her I know a group of folks who would be quite excited to come to her restaurant someday.

Love,

Polly

P.S. Beautiful photo! She looks so bright-eyed and bushy-tailed!
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Post by ant »

Dear Laura and Polly

With children like Camryn and the girl who wants to be a Gluten Free Chief my faith in this world is restored!

Love, ant
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Post by JLH »

Maybe, I should have said, he outgrew his gluten sensitivity.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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Post by Camryn'sMommy »

Thanks everyone - she really is doing well. I agree with everything that you said. I have no doubt that she will be gluten free for life. She now has a little gluten free friend who has Celiac disease. She just turned 5 and they go to each other's birthday parties. The girl's party was in the summer and all the food (including the cake) was gluten free. It was so nice to let Camryn go crazy and not have any restrictions at the party. She loved it. We'll be doing the same at her next birthday (which is right around the time the baby is due). My son continues to show no signs of gluten sensitivity. Although I get paranoid any time he gets D. He drinks too much juice and I think that is why he gets D occasionally. We're working on that.

I will keep everyone updated and i'll let you know when the baby arrives. Too bad there isn't a gluten sensitivity test they can give babies at birth!

~Laura
Mommy to Camryn - 8 years old - dx'd with LC 8/08
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Post by JLH »

Before we know it, Camryn will be visiting us on her own! :wink:
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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